My commitment is to transform our current cultural conversation about cancer from one of fear and dread to one that empowers those of us who have cancer, as well as our friends & loved ones.

I had cancer. Cancer didn't have me.

Tuesday, January 17, 2012

Alkaline Phosphatase

I took a look at this page and realized it's been quite some time since I last posted anything. And I know that often leads to questions about my well-being. So, overall I am well. And the last couple of weeks have been quite hectic.

On Wednesday January 4th, I went to Sloan Kettering for a liver-pump chemo infusion. After my blood work was complete, Dr. Kemeny informed that me the count of a particular liver enzyme, Alkaline Phosphatase, was too high so I would not be receiving the treatment and instead I would receive the traditional systemic treatment in Ithaca on Wednesday January 11th. Before I even thought about how my friend and I just drove all the way to NY only to be told it wasn't necessary, my mind was locked on how I was going to have to call Jack and cancel the gig we had scheduled at O'Toole's for Friday January 13th.

Thus far, the Fridays following my systemic chemotherapy treatment have been very difficult. The side-effects have been nausea; feeling heavily poisoned (the closest thing I can relate it to is a bad whiskey hangover); bone pain in my face, back, hips, thighs and shoulders (very much like sever flu symptoms) as a result of the Neulasta shot; and extreme fatigue. Clearly not something to manage while performing.

And I was so looking forward to doing one of the things I love most. It was only in the car on the way back from NY that I started to think about how much driving we had done, all for naught. And there wasn't anything for me to be upset about. Dr. Kemeny made it clear to me from the beginning that she only wanted her staff to do the blood work that would determine whether I receive my pump chemo treatment. However, upon delivering this news to me, she suggested that from this point forward, I have the blood work done two days prior, by Dr. Garbo's staff in Ithaca, to avoid another unnecessary trip, which I very much appreciated.

In the meantime, I had been preparing for the boy and I to move-in temporarily with a different friend, while I continue to search for an apartment in Ithaca. The place we had been since May was great. And, this is a time I need to selfishly take care or myself, i.e., peace & quiet. Living in a household with one adult and three children, plus my own child, is hardly peaceful and quiet. And there's no reason it should be. Kids deserve to be excited passion-filed little beings, which is not conducive for a person on a seven-month chemotherapy regimen seeking peace and quiet! So, as soon as my pump-chemo was cancelled, I knew I was only a week away from another systemic treatment and had less than a week to pack and find some friends whose schedules allowed for them to help me move, since I still can't really lift much or exert myself a whole lot. Yet, three days later I was blessed with the help of some dear friends, and all of our things were moved for us. And we now live in a great space in a quiet little neighborhood which couldn't be better.

And while I was typing this blog entry, I received a call from Dr. Kemeny's office; my blood work shows my Alkaline Phosphatase count is still a bit too high so I'm ineligible for a liver-pump infusion on Wednesday and will again do systemic chemo treatment in place of it on Wednesday January 25th.

The bad news? I have to cancel our only other scheduled gig, which was at the Beach House in Lansing on January 27th. This just ain't working for me. I just texted one of the guys about doing a private performance somewhere between Ithaca and Auburn. Maybe even this Friday if possible. Music is an outlet that provides me SO much. It's something I absolutely wont do without. Yes, I play music with friends - dear friends - and I love it. But there's nothing like performing with a band of incredible musicians who've come to operate like a finely tuned machine. And then add the energy of a great crowd. It's a high that can't be created any other way. And like I said, it's something I absolutely wont do without.

"Old Iron Sides"

Our Deepest Fear by Marianne Williamson

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, "Who am I to be brilliant, gorgeous, talented, fabulous?" Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”